According to the World Health Organization (WHO), 2 out of every 10 people worldwide have an intellectual or physical disability. That is approximately 650 million people. They further estimate that 80% of people with a disability live in the developing world. According to Special Olympics International there are an estimated 200 million individuals worldwide with an intellectual disability.
What I would be interested in knowing is how in the world did they come up with those figures, since in most of sub-Saharan Africa, as an example, children who are born with an intellectual or physical disability were specifically not registered at birth. So, therefore, they could not possibly be counted, if statistics were counted merely from birth records. Census attempts would likely prove just as fruitless since nearly every African home, village, or compound, by cultural norm will deny the presence and existence of a child, or children with disabilities.
By way of anecdote, I visited a compound in Zambia, accompanied by a long-time community leader, and asked the leader where the families of intellectual disabilities that we could visit were. Though it was a compound of over 10,000 people, he said that he didn’t know of any, but suggested that there was an elderly woman who had lived in the compound far longer than he, and perhaps she would know if there had been any. As I met the woman, I again asked her my question, “were there any children in the compound who had disabilities?” And she quickly answered, “no, we don’t have any of those”.
Considering that perhaps my request was unclear, I went on to describe in detail the nature and kind of various disabilities and children that I work with, and once again, she said “no, we don’t have any of those”. I was completely shocked. I was perplexed. Here was a statistical miracle. In a compound of 10, 000 of some of the poorest in Zambia, not a single individual could be found who was disabled! Statistically speaking, there should be over 2,000 individuals!
Not knowing what else to do, I took out a picture of my family, and said to the woman, “this is remarkable, an entire compound and no one with disabilities! In my family, I have three.” She took the photograph from my hand, looking at each of my children who have Down syndrome, and finally looked up at me and said, without any explanation, “there are three families who live right over there who have children like yours”.
I visited those three families. In each of these three families, it followed the same pattern. The initial denial in the doorway, the careful looking at our family photo, and then the very kind welcome into their home. Each of these families supplied us with more families, and within an hour we had families seeking us, asking “are you the man whose children have disabilities?”. According to the families I spoke with, the WHO’s estimation of 2 out of every 10 was far lower than their experience in this compound. And, yet, they were invisible. Invisible, even if you were looking for them. Invisible, perhaps until it was clear you were one of them.
On my flight home from Africa, I “just so happened” to be seated next to a consultant with one of the largest child health and welfare organizations in the world. And, I shared with him my experience in the compound. He agreed that the statistics they have for children with disabilities have no basis on actual children with disabilities.
The tragic reality is that the phenomena described here portrays not really a weakness or poor methodology in statistical representations, but belies far greater consequences for children and individuals with disabilities. First, the routine practice in sub-Saharan Africa of not registering births of children who have disabilities means that they have no formal or legal status. They can’t get a passport, have no legal or political rights, and are often then denied medical and financial assistance. Second, their is virtually no accountability for caretakers, for both community and international aid and welfare organizations often have no knowledge of the true nature of their care and condition, since they are hidden away.
As the old phrase goes, ‘out of sight, out of mind’. But perhaps that’s really how we like it.
